A difficult question? Certainly; and for most of us
who have been caring for a disabled and/or sick loved
one, an emotional and unsettling one to consider. I am
not referring to people in their final stages of life or
who suffer from conditions that spark uncontrollable
actions. I am writing for those whose loved one
continues to live indefinitely with no assistance from
machines or other specialized medical care. In such a
situation, there can come a time when living at home
becomes unsafe, especially when the primary caregiver
(usually a spouse or parent) is aging and has physical
and/or medical limitations of his or her own.
There are many factors involved and regardless of the
ultimate decision, there will be feelings of guilt from
first consideration to final outcome. I am
currently wrestling with this question daily—sometimes
hourly. For me, it boils down to a case of survival.
But whose, my husband’s or mine?
Here is the situation: My husband suffers from a
progressive brain condition caused by cancer
treatments twelve years ago. The symptoms
mirror multiple sclerosis. He cannot walk, transfer
alone or hear without hearing aids, and he has
difficulty swallowing. I must bathe him, clean
his teeth, care for our house, and work for my
medical insurance. He suffers recurrent bladder
infections, memory lapses, and randomly vomits. He
needs total care, but not constant supervision.
And he will never get better, only worse; or at
I can honestly say that I am burned-out in both
body and mind. Physically, I have fallen with him,
had my right elbow wrenched enough to develop
tendonitis, and am plagued with neck strains that
trigger migraines—all from helping my husband get
out of and into bed, into/out of the car, up/down
steps and ramps, with or without a gait belt or
slide board. Mentally, I am exhausted having
to anticipate his physical needs, entertaining him,
trying to figure out what he can (or will) eat so he
doesn’t choke, and checking on him to see if he’s
alive. I am hyper-aroused by the sound of his pager
alarm that summons me when he needs something. I
have to hire someone to stay with my husband if I
want to leave the house for a meeting, lunch date,
or extended errant running. I no longer accept
party invitations because at twenty dollars per hour
for a caregiver, I can’t afford it. His
sporadic health crises have caused me to cancel
plans so often that I dropped out of church,
friendships, visits with my family (I have a
93-year-old father who lives 400 miles away and can
run circles around my husband) and can now not even
remember how to enjoy myself. I have fallen
victim to depression and resentment, and I hate
this. I have two choices: keep him at home and
keep the status quo or send him to a care
facility—which is the equivalent of getting rid of
him—and regain some sense of self.
Something has to change and so I offer my
thoughts on why I ought to send him to a care
facility versus keeping him at home. Yours may be
different. I won’t consider the financial aspect,
only the rational versus emotional elements of such
a decision. The reasons I tell myself and others in
my situation why I should send him to live elsewhere
- He is too heavy for me to care for without
risking further injury to him and myself.
- Caring for him has caused me increasing
stress and mental damage over the years.
- Being burned out has made my care for him
sloppy and filled with unkind comments.
- He would be safer living someplace where
there are many people available to assist him,
especially if he falls.
- He could have more social interaction with
others in his general condition.
- I have an obligation to be healthy and
available to our children and grandchildren (if
I get hurt or sick, they will have no
- I am entitled to a life.
If I am able to share these rational and
compelling reasons with other caregivers, I ought to
be willing to listen to them myself. But I
cannot get past the emotions that keep me from
acting upon them:
- How can I kick him out of his own house, his
- Am I more concerned with his well-being or
mine? And whose is more important?
- He would be horribly upset and lonely.
- I would feel like I am abandoning him;
which in a way, would be true.
- He would be
at the mercy of people who don’t love him, very
likely don’t speak English as a first language,
and don’t prepare food he is accustomed to
newspapers often run stories of residential and
institutional care facilities mistreating their
clients. What if my husband is secretly
used for medical experiments? What if he spends
hours in a soaked diaper and tied to his bed at
night? What if he’s sexually assaulted?
- What would
friends and family do if I send him away? Would
they visit him, or forget he’s there?
Would I forget him, too?
- Would they
let him watch the baseball games and NCIS?
Each of these reasons and worries are absolutely
real and legitimate, so what good could result from
First, how does my husband
benefit by keeping him home?
a) He is where he
ideally belongs, in a reasonable yet waning
emotionally secure environment with familiar people,
noises, sounds, smells, and routines. In the house
his income paid for. Exactly where I would want to
be if it were me.
There will be no language/accent barriers.
I can control everything that happens to him.
I won’t have to travel to see him.
I can give him his favorite foods (yellow cake with
chocolate frosting, steak, baked potatoes, spinach,
and vanilla ice cream).
I can touch him and tell him I love him as often as
Second, how would I benefit from placing
him in a care facility?
- I would have much more freedom to work late, go to
church, go out with friends, wake-up in the morning
and not have to take care of my husband’s full
bodily needs, do some volunteer work, change jobs,
and visit my family.
- My body could start healing, both physically and
could lose the “caregiver” identity and become an
individual again. I could be his wife and
respond to him with love, instead of as a burned out
laborer increasingly resenting him for it and
wishing nature would finish its job far more
could walk into his room with a genuine smile on my
face. I cannot remember the last time I did
that. Perhaps this is the saddest part—not finding
joy in the man I love.
In proof-reading this
article, it screams at me to place him somewhere
safe so that I can become a whole, alert, rational
and fully functioning adult, wife and parent.
It says if I place him somewhere clean and safe, I
can regain the energy I had and greet him with wide
smiles and long kisses instead of gritted teeth and
averted eyes. It tells me I haven’t lost the
potential to be alive again. So what keeps me
from acting? Guilt. The total helplessness of my
husband and his absolute faith and dependence on my
love and decision-making abilities places a
horrendous unwanted burden on me—a burden tenderly
seared into my heart when he looks at me with trust
and adoration. It would be like taking the
beloved and loyal family pet to the animal shelter
because he is too old and too much work to keep
around; you hope the employees or a new family will
love him as much as your family does, but fear he
will be neglected and left to die sad and all alone
in a cage. You know this and take him anyway.
I still can’t make this decision, but
I have discussed the eventuality of residential care
with my husband so when his memory allows, it won’t
be a new concept. We decided to start looking
at places to get a visual in our minds so if the
time arrives, we can have an idea where a good fit
would be. Until then, things will remain the
same and I will think about this decision each time
his call alarm goes off, or I have to dislodge food
from his airway, or change the bed linens five
minutes before leaving for work, or icing my elbow,
missing a meeting...
Janet Ferree is a
caregiver for her husband of 32 years. She
works part-time as a technician in a busy orthopedic
clinic where she encounters many other caregivers.
She is a member of the hospital ethics committee.
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